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Reflection In spite of ongoing education and reinforcement of ethical principles related to caring for patients and families facing end of life decisions, moral distress is experienced at the bedside. Reframing the challenges from patient and clinician viewpoint may create growth opportunities for the interdisciplinary team with positive impact on interactions with patient/family and other healthcare workers.

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Objectives  Define ethical principles such as autonomy, beneficence, and nonmaleficence in the context of end-of-life care  Verbalize how to draw out the patient narrative and mediate goals that assure the voice of the patient is heard  Use specific ethics models to organize discussion of ethical dilemmas and assure ethical principles are met 3

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Ethics  “… is a process of reflection that aims to transcend the diversity of moral traditions when responding to value conflicts about what is right and what is wrong.” Bioethics Consultation Group, 1992  Ethical conflicts occur when there is A conflict of values No clear right and wrong 5

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Beneficence  Act in the best interest of the patient  Weigh the benefits vs. burdens of any proposed treatment  Educate patient regarding condition and prognosis  Time-limited trials reinforce patient participation in the process and assures goals of care are met 6

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Autonomy  Recognizes the right of a patient with decision- making capacity to make decisions about treatments according to his/her own beliefs, cultural and personal values, and life plan Even when those decisions differ from what has been advised or recommended by a physician Includes life-prolonging or sustaining therapy Unwanted treatments, including nutrition and hydration 8

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Autonomy  Only exists in the context of accurate physiologic data  Can any of us make a “good” decision with only a piece of information, or some missing?  Complex notion of well-being and quality of life is symbolic of being in charge of one’s own life 9

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10 Case Study J. is 50 yo female, who is terminally ill with breast cancer, and living at home on hospice, with her husband, Joe, as her primary caregiver. The Interdisciplinary team is worried that she is not allowed appropriate pain control because Joe doesn’t like her “too sleepy”. They also fear she is unaware of her prognosis because Joe, who is “loud & controlling”, will not let her have “alone time” with the team, and answers all questions for her. She has already been taken to the hospital twice with episodes of severe shortness of breath and chest pain, and there are no advance directives or DNR.

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Self-Determination What is communicated + How it is communicated + What is understood + ________________________ = Foundation for Self-Determination 11

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12 Case Study K. is a 65yo woman with ALS. Her illness began in the brain, and at this point she is totally unable to communicate, although she can still walk a mile with her husband holding her hand. She has been in hospice for four months when her son, a well- educated and articulate professional person, asks about when and whether it would ever be appropriate to discontinue use of her feeding tube and allow her to die without artificial nutrition. (She takes nothing by mouth.) The son reports that K.’s husband is retired military; he is very committed to his wife and her care and quite satisfied with hospice care. However, the son and his two sisters are concerned that “Mom would never want to be kept alive like this.” He reports that his mother has an AD, although a copy is not in the patient’s chart and the healthcare team has no knowledge of it. The physician states he “could never support a decision not to feed as long as the patient is not in unrelieved pain, and the patient appears to be quite comfortable”. He cannot understand why the son would want to discontinue feeding. The husband comes forward with both a living will and DPOA, both signed 11 months ago, right after diagnosis. The living will states that K. absolutely never wants any kind of life-prolonging measures “once I am incapable of clear decision-making.” She goes on to describe every kind of feeding tube, says that she doesn’t want any of them, that she understands that she might feel hunger and that dying of lack of nutrition is preferable to being kept alive on a feeding tube. She goes on to say that she also does not want any kind of life-prolonging measure or treatment that might be invented in the future that she can’t foresee. The DPOA names her husband and son equally as decision-makers.

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13 Case con’t The family is shocked and chagrined to reread the living will, which they had not looked at since it was written. They agree that she became incapable of making decisions or communicating three months after it was written. Two months later she began to aspirate when her husband was hand-feeding her, and a feeding tube was inserted. Even when faced with the living will, the husband is reluctant to make a decision to stop using the feeding tube the daughter reports that she and her brother want to support their father, that even thought the DPOA names them equally the brother will not fight their father over the decision. The husband feels he is being asked to “murder my wife.” Are the son and husband equal decision makers? Does the husband really have a decision to make, or has the patient has already made this decision? Is there a dilemma in the existence of both the living will and the DPOA?

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Authenticity  “Tied into notion of integrity and wish for one’s life to have a coherent narrative”  Beyond choosing, person has the capacity to be a distinct individual  Character, values change over time Restore, repair and reshape who one is in the face of challenges Integration of “a new you” Catch up with what is happening

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15 Case Mrs. B is a 67 y/o female with breast cancer and mets to the liver and bone. She has been told recently that, despite aggressive treatment, her liver is growing, probably indicating advancing disease. She elected hospice, and you have seen her several times while waiting for her discharge. Mrs. B remains awake, alert, and oriented, and you genuinely enjoy your visits with her. Despite being cachetic and very energy depleted, Mrs. B continues to cook for her family when she is at home, usually her husband, and her daughter and son when they visit. Both live within 10 miles. Atypically, when you arrive for your next visit, Mrs. B is alone. She expresses relief at your presence saying, "I HAVE to talk to you alone." She goes on to tell for you the story of her disease, but interjects bits of her life history of which you had been unaware. Three times during the 20 minute near soliloquy, she conveys to you her life long history of independence. At one point she says, "I have always taken care of people. That's who I am. That's what I do. So, you see, I can't possible go on like this. I'm tired of being sick. I'm tired of being slow, and I HATE watching myself waste away like this. This is NOT who I am." Mrs. B continues, "I can’t go on hospice. Everyone will think I am a quitter. I want to be done with this but I can’t have them see me weak. You've helped me with everything else so far. You need to help me with this, hospice is giving up, and the doctor says there are other things to try. I know they won’t help, but at least I won’t be giving up." What do you do? (And no, no one comes through the door to help you avoid having the conversation. It's you and Mrs. B for as long as whatever you decide to say and do, takes.)

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Best Interest  Best interest is not the same as self-determination or authenticity but both are elements of best interest “Does the decision fit with his/her prior beliefs and values? “Making my own decisions is linked to living a life that is mine” Decisions don’t want to “run the risk that the person would end up in a life” that would not be his/her own  False beliefs and poor reasoning by surrogates may have to accede to best interest considerations  Patient’s interests include not only living in accordance with his own values but being conscious of doing so Brudney, D 2009 “Choosing for Another: Beyond Autonomy and Best Interests” Hastings Center Report 39 (2),

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Challenges in Decision-making Nearing Life’s End  Limited discussion of underlying health status and disease trajectories  Too many choices rather than a focus on goals  Symbolism of interventions/what they will and won’t achieve  Recognition of legitimacy of patient’s culture and validation of this specific to each individual within a culture  Allow patient and family “to catch up” Gillick, M “Decision making near life’s end: A prescription for change”. JPM 12 (2),

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18 Case Mrs. A. is a resident in a nursing home and is 91 years old. For several years she has been in a persistent vegetative state (PVS). In PVS, all upper brain function is lost. That means a person is no longer able to control conscious actions such as thinking, speaking, and eating; the person is permanently unconscious, although not in a coma. In Mrs. A.’s case, the PVS was due to numerous strokes she had over the years. She was not able to talk or recognize her family. She lay curled up in bed, fed through her stomach by a surgically placed gastronomy tube. She was provided good nursing care and seemed comfortable. Jane, Mrs. A.’s daughter, was a devout Catholic. After much prayer and many talks with her priest, Jane came to the conclusion that what was being done for her mother was not right. She visited her mother every day, remembering her as the busy, friendly, deeply religious woman she had been. Jane felt that if her mother were able to decide, she would not want to be kept alive in her present condition, but would what to be released to the next life. So Jane got up her courage and asked the doctor who was caring for her mother to stop the tube feeding and let her mother die in piece.

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Case Con’t The doctor said, “That would be both immoral and illegal. You have no right to ask me to do such a thing.” This made Jane feel terribly guilty, especially since one of her two daughters, the one who lived out of state, had accused her over the telephone of “wanting to kill Grandma”. Jane’s daughter, who lived in the same city as her mother and visited her grandmother occasionally, agreed with her mother’s request that Mrs. A. be allowed to die. Jane then talked with the nursing home administrator who, although sympathetic to Jane’s struggle, told her that only a doctor could order the tube feedings stopped. The administrator asked the chaplain to talk with Jane, who by this time was feeling so confused, guilty, and overwhelmed that she did not want to press the issue any further.

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Medical Futility  Discussed in terms of the principle of proportionality  Benefit versus burden  Interventions will not achieve the intended result  Communication must include clarification of misconceptions and unrealistic expectations

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21 Withdrawing/Withholding  Legal and ethical to honor patient’s choice, legitimacy of advance directives, and importance of surrogate decisions  There is no ethical or legal distinction between forgoing and withdrawing treatments  BUT how does it feel?

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22 Case G. is a 68 yo man with advanced COPD and Emphysema. He has been on a hospice program for six months. At the time of admission he had a living will which stated he did not want to be intubated and kept alive on a ventilator. Two hours ago G. became acutely short of breath. The hospice nurse arrived and began a nebulizer treatment. She coached him through pursed-lip breathing and relaxation exercises. At present, G. is out of distress. He tells the nurse that he was “dying by suffocating” and that it “was terrible” “I never want to die like that. If that happens again and you can’t pull me out of it, I want a tube down my throat and a machine to breathe for me.” The wife calls you and wants to know what to do now, if she has to decide for him?

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Benefit versus Burden  Reconsider goals as situations change  Benefits of treatments cannot be determined independently from their application to a specific patient’s: Diagnosis and prognosis Beliefs and values Quality of life Goals of care 23

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Double Effect  The act is good or morally neutral  Only a good effect is intended  Bad effect must not be a means to good effect  No alternative way to achieve good effect and proportionally grave reason for running the risk of bad effect

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25 Case D is an 85 year old man residing at the Quiet Night Home. He has been on the hospice program for eight months. At that time, D was capable of making a health care decision and signed his own informed consent for hospice care. His condition has slowly deteriorated since then. Yesterday, he was too weak to eat, and the daughter requests he be moved to the hospital, and wants to initiate tube feedings right away stating, that it is “right thing to do”. D’s son is notified, who is in charge of D’s finances. D never completed a living will or a durable power of attorney, but his son states that they had discussed “being like a vegetable” and that D had said many times he wouldn’t want to live that way.

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Hastening Death and the Boundaries of Self  Moral significance on the difference between killing and letting die  Uncertainty with where the boundaries of self are in the context of end of life  The self is not just subjective, psychological but includes an objective reality  IDG must look at principles of causation Best interest, futile care, and underlying condition

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29 Case Study Mrs J is 88 years old. She has had dementia for 12 years. She lives with an unmarried daughter, one of 6 adult children. Several family members live out of town. Over the past 3 years she has become bedridden, incontinent and speaks less than 10 words. She has had 2 hospitalizations in the past four months. One for a bowel obstruction and one for aspiration pneumonia. The daughter notes that she has lost approximately 25 pounds and eats less than 25 %of a normal adult diet. She is often agitated and crying. Pain is most apparent when the daughter tries to bathe her and she cries out "leave me alone." Charted physical exam: a thin, cachectic woman with a B/p of 120/80 and a HR of 110. She previously required antihypertensive medication but has been spitting out her pills. She has two stage 3 sores, one on her heel and one on her coccyx. The daughter has devoted all of her life to her mother for the past decade. She is concerned about the weight loss and spends hours a day trying to feed her. Mom often pockets the food or spits it out. There is a living will but the daughter refuses to bring it in. She knows her mother is very ill but cannot bear the idea that she is "starving to death"

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Grief Reactions  Grief reaction for surrogates related to withdrawing/withholding and letting go Families must begin to grieve to make decisions Pre-grief requires recognition that loss is coming Reflective transition must occur to find peace with decisions made A process which takes time

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Narrative  Stories, motivations, values and goals that are woven together constitute the substance of real lives  Text of past life, what said, how said, and what was important to the patient  Participants must illustrate the narrative not only as what they believe But why and what lead to this belief  Happens through properly timed open- ended questions by the literary coaches 34

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Narrative Chaos  Fluid and living, changing over time  Wander in and get your feet wet  Sorting out the patient in the story Acknowledge many stories are part of one  Spend more time listening than talking  Use empathetic statements to demonstrate engagement with the stories  Provide explicit support for the family 35

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Advocacy Without Adversary Existential Advocacy “help patients become clear about what it is they want to do by helping them discern and clarify their values in the situation and only on the basis of that self-examination, to reach decisions, which express their reaffirmed, perhaps recreated, complex of values” Co-experiencing to assist with authentic decisions (Gadow, 1980)

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Existential Support: Elements of Drawing In  All have equal standing  Introduce the purpose of conversation  Prompt family to tell how they understand the illness  “Explanatory model” is their account of the illness trajectory  Sensitivity to labeling which may thwart development of the narrative consensus  Provider guides the discussion 38

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Discourse  Spans truth claims related to what is Medically necessary Ethically required What is “best” for patient  And the moral claims regarding what ought to be  Formed by cultural structures and local power relationships of all parties 40

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Really Hearing: Vulnerable and unshielded

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Chaos  Wandering through a history of illness with a patient and his family  Asking if the patient is a veteran  Listening to a lecture about keeping on the oxygen  Keeping legs elevated and wearing slippers

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Qualities of Mediation  Self-awareness  Presence  Authenticity  Congruence  Integration “While many would say that the settlement of the dispute constitutes a successful outcome, others contend that empowerment and recognition, not settlement, are the hallmarks of success.” Bowling & Hoffman, (2000) 43

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“Integrated’ Mediation “Presence is a quality that can be developed in all areas of our life. In the heat of any personal conflict, one can work on developing the capacity to be present to every aspect of that conflict, while stepping aside from one’s own point of view and learning to distinguish one’s thoughts, from one’s emotions, from one’s perceptions, from our conflict partner’s point of view, to embrace a broader, more integrated view…to be peace” Bowling & Hoffman, (2000) 44

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Stepping in as Mediator  Center oneself An image, symbol or concrete touch (hold on to the door handle a brief moment longer)  Provide neutral safety space to participants  State the purpose of mediation Hear the voice of the patient through the narrative All have a piece, allow all stakeholders a voice All have a common focus, what is best for the patient

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Let Go of YOU  Model through body language, tone and listening how all can be part of process  Engaged in the process not outcome  Know your BANTA (Best alternative to a negotiated agreement)  EMBRACE Conflict!

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Remember to…  Demonstrate transparency through clarifying statements  Keep in mind the family, not we must live with the decisions  Not repeat hostile or volatile words, but acknowledge the feelings behind them or summarize the information in them  End summaries with a question to move the discussion forward  Ask clarifying questions which draw all in  Offer solutions for all or part of the dispute

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4 Box Method Medical Indications Principles of Beneficence and Nonmaleficence What are the goals of treatment? What are the probabilities of success? Is the problem acute? chronic? reversible, emergent? Patient Preferences Principle of Respect for Autonomy Is patient mentally capable and legally competent? Evidence of incapacity? Has patient been informed and understands? Is patient unwilling or unable to cooperate? Why? Quality of Life Principles of Beneficence and Nonmaleficence and Respect for Autonomy What are prospects for return to normal life? Are there biases which might prejudice provider’s evaluation of patient’s quality of life? Are there plans for comfort and palliative care? Contextual or External Principles of Loyalty and Fairness Are there family issues that might influence treatment decisions? Are there financial and economic factures? Are there limits on confidentiality? Are there religious or cultural factors? Problems with allocation of resources? 49 Jonsen,A.R., Siegler,M. & Winslade, W.J.(2010) Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. 7 th Ed.. New York:McGraw-Hill

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“We can say we have done ethics well if we have asked all the right questions to see what is the right answer for this patient as a part of this team at this time” M. Murray Mayo, RN, PhD Ursuline College, The Breen School of Nursing 51